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IDEAL Covid-19 Dementia Initiative (IDEAL CDI) Update on qualitative research

The aim of the qualitative research is to gain insights into concerns and issues encountered by people living with dementia and their carers during lockdown to inform future policy and practice. Data gathering has taken the form of telephone interviews with people living with dementia and their carers and monitoring of relevant websites and discussion forums.

21 telephone interviews have been conducted. Interviews have revealed how people are coping in very different ways but in general terms people are either:

  • Coping well with no or only minor difficulties
  • Coping but with some degree of difficulty
  • Only just coping and experiencing significant difficulties

A theme of ‘emerging from lockdown’ has emerged from the more recent interviews. People are experiencing a mixture of anticipation and anxiety. Some important messages we are hearing include:

  • The need to target practice responses according to levels of coping; including the provision of personalised information.
  • The need to provide reablement to recover abilities lost or impaired.
  • The need for formal carer assessment and respite services post-lockdown.
  • The value of maintaining and increasing investment in ‘just checking’ services.
  • Anxiety amongst some people living with dementia about re-emerging into public space and the need to build dementia friendliness into the ‘new normal’.
  • The value of developing dementia inclusive community support for the future.
  • Reminders of the importance of strong links with other specialist services e.g. domestic abuse; and for self-funders to have equal access to social care support.

Many of these messages are also reflected in the content of relevant websites and discussion forums. Follow up interviews with a smaller group of people who are coping with some difficulty or just coping are planned for week beginning 27th July. In addition, interviews with a small group of black and minority ethnic participants have been undertaken and are currently being analysed with a view to identifying any particular issues and concerns they have encountered.